What is your experience? How were you diagnosed?
 

Through skin biopsy, other tests? What's your pain level like most days? Are you able to function pretty well? Just curious.

Neurosurgeon DX
 

I had been in a car wreck and thought maybe damage to spine. Had Conductivity test plus Mylagram and the doc said Periferal Neuropathy, go home and lose weight. Said he would refer to Bariatric surgeon if I wanted. Had muscle wasting and pain level bad enough to use Hydrocodone for pain and Ambien for sleep. Had used walker for about six months, not now. No pills now except for Tylenol/w/Codein. Legs much better but will not recover 100%.Can walk about 100 yds and thankful for that. Good Luck, Ken in Texas.

many labs, nerve biopsy, emg/ncv, mri, spinal tap, more and more labs, long list.......unfortunately a diagnosis with PN seems to be a matter of ruling out numerous other things.
Every day functioning okay thanks to AFO's. I work full time, drive, walk, exercise, clean house, shop, garden. Most people that don't know me do not know there is anything wrong, as I always wear pants to cover the AFO's.
Things I miss and are not able to do, ski, running, hiking, waterskiing sports.
I find standing in one spot without something to put my hard on for balance difficult too. So going to movies, concerts, places with buffets lines etc are hard for me. As well as outside places where there is not always something to use for balance.
I prefer to shop in places where there is a cart, much easier for me.

I had EMG testing in my arms when I was pregnant.
This showed 80% loss of function in my hands.

I haven't even had that or a nerve conduction test , and my muscles do not respond at all to rehab i.e. the joints just get worse because of the added strain caused by lack of response . It seems now also after a PT exam I have Hyper mobility Syndrome too . My feet are swollen constantly and purplish which I am trying to argue is possible PN - but my shrink / doc say otherwise its because I,m not weight bearing ( I am disabled ) though they think its because I have delusional disorder / belief of Ehlers Danlos( look up DSM 5 - long stry ) . This however can no longer be the case with evidence of hyper-mobility all over my body and the fact HSM .JSM is an underlying feature of EDS so I'm hoping it will discharge me from where they've had me locked up for 3 months. In meantime I'm tying to find any excuse I can to show I have pn so I can prove that they rehab they 're trying to force me to do would not only having no effect but also be dangerous to my HMS condition.

My story is on my signature line.

I've had 4 EMG's, multiple MRI's, countless injections (epidurals, other joints) but it wasn't until I had a mylogram that the Dr. understood why I was in so much pain. When my back would start screaming the pain in my feet would be magnified making me miserable.

It's been 3 months since my spinal fusion (L3-4-5) so much of the pain is gone it is amazing.

I still have neuropathy in my feet and still take Gralise, but this is the best I've been in almost 5 years. I've tried to reduce the dose, but wasn't able to but the doctor thinks in time I should be able to.

I'm sure my story will be different than most especially since I'm experiencing relief.

Skin punch biopsy. All other tests normal... Countless blood work, mri of brain and full back, erg, emg/ncv everything came back nirmal.

Mainly based on symptoms. Lots of pain. Also, the fact that pain was worse at night than in morning. I was put on gabapentin right away and that eased pain temporarily. So the fact gabapentin worked so well also confirmed Dx.

Idiopathic SFN based on symptoms and ruling out major causes of SFN with four MRIs, several rounds of bloodwork, and a spinal tap. My neuro didn't think the punch biopsy was necessary.

I'm better than I was last year when diagnosed. Possible reasons are less anxiety about it, better diet (low sugar/processed food), supplement regimen, shift in hormones. I don't take anything for pain now.

Still waiting on a diagnosis. Had MRI's of Brain and all 3 sections of spine, EMG/NCS, countless blood tests, probably a dozen general neurological exams. Nothing abnormal found. Between 4 different neurologists, all they will diagnose me with is "disturbance of skin sensation". The neuromuscular specialist said skin biopsy was not warranted. My general neurologist said testing has reached the "point of diminishing returns" for me - so he's not recommending anything else. (All he wants to do is provide symptomatic relief through medications.)

My primary doc is the only one to actually say my symptoms sound like an ideopathic neuropathy. But again, that was not an official diagnosis.